Surgery for rheumatoid arthritis - upper limb and neck

Some of the people we interviewed had upper limb and neck surgery and talk about their experiences here.

An important thing to bear in mind is that nowadays medication taken soon after diagnosis can slow the progression of joint damage and lessen the need for surgery. Disease Modifying Anti-Rheumatic Drugs (DMARDs) and biological treatments (anti-TNF therapy, rituximab and others) have made a big improvement to the way rheumatoid arthritis can be treated. These drugs tend to stop the gradual destruction of bones and joints and reduce the need for surgery. For people who have had RA for a long time (before these drugs were available) surgery may still be needed as the damage to bones and joints has already been done.

Restricted movement and pain in the arm, particularly shoulders and elbows, significantly limit people's everyday activities. People had difficulties with reaching into cupboards, dressing, toileting, cleaning teeth, brushing/washing hair, bringing food to the mouth and gripping eg drinking cups. However, several people had adapted to cope with these restrictions.

Three people had had shoulder replacements that removed most of the pain and increased movement, which had often been very limited with arms stuck close to the body. Replacement of the joints rarely led to being able to lift the arm above the head but people were very pleased with their improved mobility. A 49 year old woman had both shoulders replaced after a 15 month wait.

Lecturer part time, married with three children. Third child born 8 years after RA diagnosis (1994). First interview 9/02 and second interview 11/03.

I've had, I had a bilateral shoulder replacement in 2000, which was, well that was fantastic really, I mean that sort of it gave me a new lease of life because with your shoulders sort of stuck to your body, you can't pull your pants up and things like that and you know I sort of lost a fair old bit of weight because you can't get your mouth, your hands to your mouth either.

Well, my shoulders were actually stuck to my body, really. That was, they wouldn't move, I mean they would not do anything as I said, going to college, I'd have to make sure my husband was, if I wanted to go to the toilet, I'd have to give him a quick ring to say, 'Look I'm going to the toilet', you know, 'I've got trousers on' or whatever 'I need my zip'. So it was really, life was getting extremely impossible and just sort of reaching a filing cabinet if you've got your shoulders stuck to your body you can do so little, really.

I went to the consultant about my right shoulder which was very, very bad and he said 'Well show me your good one' and I did and he said 'Right, we'll take them, we'll do both of them really'. So it was, the waiting time is horrendous really, you know, once you know you're going to have it done it would be nice to go in the next day and have it done because the wait is horrendous really. Knowing you have to have something done and it only just, it gets worse and worse and worse. You know, the condition gets worse and worse and worse so what would be nice is to, you know, they've decided - do it.

But it's been, he's, he told me the outcome, probably what the outcome would be, that there would be no more than 90 degree, well you couldn't move it more than 90 degrees, yeah, 90 degrees, you couldn't move it more than that. That's what he had experienced in the past so I then thought 'Well what's the point of having that. If I've only got 90 degrees?' But it's wonderful, I can, you know, take my arms away from my body they were literally stuck to my sides, so it's been wonderful. That has been just, you know it's given me a new lease of life.

Two people had some bone removed from their elbows, two had complete replacements but four more had been advised this operation might be necessary. One woman who had a replacement 12 years ago was disappointed with the movement she gained although it had for many years reduced her pain, but this had increased again recently and she was awaiting a revision operation. Another woman described her bilateral elbow replacements. The operation was painful but she was very happy with the results.

Housewife (previously secretary), married with 3 children (one born since RA diagnosis) and 2 step children.

I had the first one done and then I had the second one done three months' later. When I had the second one done my first one, they were amazed with my first one, at how good it was. The scar was brilliant, the movement was excellent. I could touch my shoulder and, and straighten it to the extent that they got in the operating theatre because you'll never every get a dead straight arm and so they put me in very quickly because the recovery on the first one was so good.

So within the three months I had as much movement as I was going to get anyway so, intense physio, things like that and then you do it all at home as well. You work on it all the time.

Oh yeah, when, when you wake up you know the following day and they say to you take the dressing off and they sort of look at you and say, the physiotherapist looks at you and says, 'Right come on then move it' and you think 'Oh no I can't it's too painful' and they gently lift your arm and give you that first bit of movement that initial feeling and seeing that actually move and you think, 'Gosh with all that swelling and the blood and all the marks and the bruising and everything', you think 'if I can move it an inch up and down at the moment what am I going to be like in six months' time or weeks' you know so you, that feeling straight away you think, 'Great I've done it' and that, that blocks out all the pain you go through and everything else and it's all worth it, definitely, definitely worth it.

And what sort of exercises did the physios give you to do?

Just up and down, you know, virtually at the beginning you just have to, you use your other arm to, to take the weight to lift it up and down just to get it to actually move. Once you've progressed from there you can actually use your own muscles to lift up and down. I also used, you can buy these machines that you can use for like tummy exercises that make the muscles move. I actually used those on the top of my arm to, to try and bring back some muscle because through the years I've lost all my muscles at the top of my arms so I have no real strength.

I found that helped as well and then once you get the upward lift of your arms then the next one is to, to virtually bounce the arm so it is pushing down to get the straightness which I used a, a tin of baked beans in my hand because it was a weight on it, to, to stretch the tendons because obviously being fixed in a position for a long time your tendons also shrink so, it's quite a lot of work but it is well worth every minute of it. You know you do appreciate it in the end and you find that doing your normal everyday things which you start to do, I started to do a bit quick, but you do them, you're exercising anyway because your using weight and lifting and your moving the arm. I don't think I ever did any twisting movements on the arms, it was always just sort of virtually up and down and then you get your straightness and your, your bend from that.

Wrist operations included bone removal, carpal tunnel, wrist fusion and partial replacement. They removed the pain and improved function, particularly strength and grip. One woman had carpal tunnel release on both hands after tingling in her fingers. Another woman's wrist replacements on both sides were 'terrifically successful'. A 38 year old woman explained why she had decided against having her wrist fused.

I've had the carpal tunnels done and that must have been about, it was a long time ago, about 15 or 20 years ago. And about 10 years ago, the wrist bone removed 'cos it was too early to replace it, with any artificial joint, so they just took out. So.

So has that hampered the movement of it?

It has done, yes, yeah, there're certain things that I can't do, that I used to be able to do like play the piano and things like that because of the moving, it doesn't move so fast up and down the keyboard. But never mind [laugh]. I learned to play the guitar instead [laugh] so that's left handed so that's OK.

And the carpal tunnel, what, what sort of symptoms did you get in order to realise that there was something maybe doing that?

Again that was quite a lot of pain and sort of tingling in the fingers and the ends of the fingers, although they were dead but I mean, they still are, so that's one's party piece carrying around a cup of coffee, because it doesn't burn you see [laugh]. Stick pins in the end of your, needles. So that was it basically and the fact I really, they weren't sort of bending and doing things that they should do. So they did that.

And what, you're still tingling at the ends but '?

Well they're, they're sort of dead at the end now so as I say I could stick a pin in it and I wouldn't feel it.

So what was benefit was the operation?

It took away the pain that was in sort this part of the hands and made the fingers more flexible but yeah.

And that's all the surgery you've had?

That and just having the, the wrist bone removed, yes, that's the only surgery.

Was that more pain?

That was incredibly painful, the wrist, yes and very stiff. It wouldn't do what I wanted it to do so I said, 'Right get rid of it'. So, that's been OK.

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Profile Info

Age at interview:

63

Sex:

Female

Age at diagnosis:

36

Background:

Retired physiotherapist, married with two adult children. Part private healthcare (latest surgery).

I had my wrists partially replaced and that's been terrifically successful. I think there were probably given a life span of twenty years and I think that twenty years is up but I'm not thinking about that. They been very successful, they're very strong and I've got silastic in there, which is a mixture of silicone, and plastic and they're strong and been very good. Don't move much but very functional. They don't hurt, that's the main thing.

Is that the main problem, you know, prior to going in for surgery?

Yeah, it's the pain, yeah, localised pain that couldn't be controlled by drugs, can't, you, oh I needed to wear splints to work in 'cos I couldn't bear to move my wrists. So you may as well get rid of the pain. You're probably gonna get a stiff wrists anyhow so get rid of the pain and have them stiffened a bit and you very soon learn to accommodate that. You do all, you just your body helps you very quickly. You think, ooh can't move my wrists, won't be able to do this but you do, there's very few things that you know, just your other joints accommodate it and you maybe do things in slightly different ways but you can manage fine, especially if they don't hurt, great.

So you didn't need your splints after that?

No, no.

And how did you sort of approach, I mean you know now it's been successful but can you remember sort of how you approached the surgery, were you, how did you feel about going in?

Scared to death. Yeah, I was scared to death. I was and I was very anxious about the post-operative care because for something like four weeks, I could clean my teeth, and lift a half, I could lift a cup of tea, clean my teeth and wash myself, that's all I could do. I needed help getting dressed, oh I couldn't lift anything. I needed help getting in and out of bed. Oh I was hopeless. And I mean that, when you know, that when that's ahead of you, you think, oh that was depressing that bit. But I had lots of help. People helped me and it was so worthwhile, so, it was so worthwhile, yeah, fantastic.

So when you went in for sort of second and third operations, how did you feel?

Yeah, well I don't think any of them were as debilitating post-operatively as the wrists, because I opted to have them both done together, to get it over with, was maybe a bit heroic. But I think it was a good thing to get it over with because it was a sort of three month recovery time for each wrist, you know one after the other, or just have them both done together and so they said, well if you're sure you can cope. I thought well I'll have a go and I did manage but it was hard work. But it was well worth, it was so worth it.

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Profile Info

Age at interview:

38

Sex:

Female

Age at diagnosis:

21

Background:

Unemployed catering consultant. Cohabiting with partner.

So but that's been okay, but he said 'While we're there are you sure you don't want the wrists fusing?' I thought 'No', I think for however bad they are and there's not a great deal of movement in them anyway, and they do get extremely painful, but I'd rather have that wee bit of movement in them and put up with the pain you do get, because I just want to be able to do things with my hands, whether it's, I think if they're fused, I don't know how people really cope. I wore my splints solid for a week just to see how I would put up with it, and I thought no, I just want that little bit of movement in there. And I don't think the likelihood, I don't think they can ever do an operation where there would be movement in them, I don't know, I think that it is, I think if they get that bad it's got to be fused, so we shall see.

Hand surgery was often done to transplant or repair damaged tendons in fingers and thumbs, fuse joints, straighten fingers and occasionally replace finger joints. Splints were often used afterwards to help keep the fingers and thumbs in good positions. People found the time it took to recover from such operations, often 2-3 months, was quite restricting. Positive results included reduced pain, increased grip and strength and being able to write again. These operations were often carried out as day surgery and one woman had her thumb fused with a local anaesthetic. Some people hesitated to have hand surgery, fearing they might lose what movement they had. One woman's synovectomy operation was painful and didn't help.

Lecturer part time, married with three children. Third child born 8 years after RA diagnosis (1994). First interview 9/02 and second interview 11/03.

I've actually had a tendon replaced in my thumb 'cos my thumb, the tendon snapped, so they transferred a tendon from my index finger to my thumb' well they, you know they replaced this, this knuckle joint as well, here as well'

No I don't want any more surgery if I can help, you know this is the, sort of, it takes it out of you, it physically and mentally you know it does really and it's the recovery.

I hadn't realised that this would be such a long job because this is the start of an academic year and I had this done on August 12th and it's kind of stopped me in my tracks. I thought I'd go in, have it done and come out and carry on but you know, I was in plaster for two weeks and sort of a splint for 4 weeks or whatever. So yeah, it takes a lot of sort of rehab, really it does and, and it kind of stops your life for a while and it's not easy really.

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Profile Info

Age at interview:

37

Sex:

Female

Age at diagnosis:

19

Background:

Bank clerk, retired age 33 (due to RA). Single living with parents.

After that they did an operation on my hands because as a result of the hands curling in and the steroid injections they stayed sort of straight, my hands, but as time progressed I gradually lost my grip so I didn't have a very good grip. The orthopaedic consultant thought that I could benefit from a synovectomy which was just basically taking away the swelling and the tissue from around my tendons and that was hopefully going to give me a better grip.

So I had that done on my left hand first and it was a very painful operation and again that was very frightening because I didn't know what to expect and the immediate aftermath of the operation is there's a lot of blood that sort of leaks out when you're trying to exercise your hand and for such a small area there's a lot of pain, so it was quite hard afterwards, but again within a few weeks, once you'd done your exercise and things, things came back to normal. But the operation wasn't successful so I never went ahead with the right one.

Neck Surgery

Two women, with RA for over 20 years, had very painful necks caused by the bones deteriorating and crumbling so that they needed to be fused and secured with metal plates attached to their skull. This relatively rare operation was worrying for both in that it carries a risk of paralysis if the spinal cord or nerves are damaged. The operation left little or no rotation or up/down movement but they adapted by moving their body to see things. One of the women required a second operation to have a further bone graft and plate attached to the front of her neck.

And I could manage for a, for a short while to do things but then I had, would have to lie down or sit down. And it was very, very difficult to cope with. The, the rheumatologist x-rayed my neck and said it was in a pretty bad state. And gave me a collar to wear shortly after that. Sort of soft supporting collar which actually had a, an enormous amount of benefit for my neck. It was amazing what putting a little soft collar round my neck did. It, it meant that I could function OK without that pain that I was in before.

I could carry on doing things and it helped a lot but they felt that it was very risky to carry on with it in that condition. He warned me that if I fell over, if I was outside the house or if I was in a car accident or anything that I could become paralysed or, or I might die from it. So they recommended an operation to fuse it.

Which, which was probably the most difficult operation to face. It was, it was a little frightening because the, the surgeon who did it who was very, a very good surgeon and a very nice man began the consultation by saying 'of course this operation carries a risk of paralysis of your arms and legs' which after he'd said that I couldn't really concentrate on anything else that he was saying.

I don't think that he really meant to frighten me like that. I think he, I think they're just required to tell you the risks each time. But I went away feeling that I, I couldn't live without the operation but that I couldn't go in and have it either. That was very, very difficult.

I don't think the surgeon said very much at all about how I would feel afterwards. And I was quite all right in hospital because I was lying down flat on my back most of the time and so the full effect of what they had done wasn't apparent until I came home. And my head to begin with, because of the radical nature of that operation, felt entirely unusual to me. I had, hadn't any feeling in the back of my head at all. It was completely numb so I felt as if I didn't have a back to my head.

It wasn't painful at all, it was just very, very disconcerting and I thought perhaps that I was going to be like that for the rest of my life, which was a great worry to me. so I had to go back and ask the, the doctor because the surgeon had then gone on holiday, who said that probably the feeling would come back properly and after about 2 months the feeling began to come back and it, it's now not, not exactly as it was before, it's slightly different but it's, it's nothing, nothing difficult at all. Yet the actual operation was really very, very successful and has completely, completely solved that problem and it's also permanent. And it would have been good if somebody had, had warned me that your, your whole head and neck feel, feel very, very different and that it's only temporary.

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Profile Info

Age at interview:

53

Sex:

Female

Age at diagnosis:

30

Background:

Self employed marketing consultant. Married with one adult child born after diagnosis. Founder of National Rheumatoid Arthritis Society (NRAS). Chair of charity and active campaigner to raise awareness and increase standards of care for people with RA.

And they were going to put a metal plate and screws into, into my neck and, as I say, I, I was quite frightened about that and I was in hospital for about 10 days and it wasn't actually as bad in terms of pain as the hip and the knee have been but it was, was more frightening because of where they were operating.

Anyway, after I'd had that done, a few months later I was still almost in as much pain as I was before the operation and so more x-rays were done and they decided that they needed to go in through the front of my neck this time and, and put a plate on the front and more screws so that it was being shored up effectively from both sides. So that did upset me, got a bit weepy about that at one point. But you just have to grit your teeth and get on with it you know. You have to have it done.

I had the second neck operation and it's been, it's been better since then but I still get a lot of pain in my neck, especially when I've been on the computer a lot and I do work a lot on the computer and you know it gets to a point where you, you know, you just, you just have to come home and put your head back and, and sort of do nothing.

But one of the reasons for going onto anti-TNF treatment which I did in I went onto a trial prior to the licence of one of the anti-TNF drugs, in early 2000 was because I had to have this second op, neck operation and they felt that the anti-TNF would be a better chance of the bone graft taking because they took a bone graft from my hip to insert into my spine. And the first operation the bone graft hadn't taken, which is one of the reasons why we needed to do the second operation.